Caring for someone with Angelman syndrome is both meaningful and demanding, and having the right support makes a world of difference. This respite training resource was created to help families and caregivers feel more confident, informed, and prepared when providing care. It offers an overview of common characteristics, safety considerations, communication approaches, and day-to-day support needs for individuals with Angelman syndrome.
Whether you’re a caregiver training someone or learning to provide care yourself, this guide is here to help. It outlines key topics that you should cover during training to ensure the best care possible.
If you’re being trained, use this guide to understand what areas are important and don’t hesitate to ask questions about anything that’s new or unclear.
Thank you for your commitment to providing compassionate, informed respite care.
Disclaimer
This caregiver and respite training is provided as a resource to support families and caregivers of individuals with Angelman syndrome. Please note this training is not comprehensive and is intended to serve as an informational guide only. It should not be used as a substitute for hands-on training or professional medical advice.
Caregivers are encouraged to seek in-person, practical training tailored to the unique needs of their loved ones, including but not limited to varying levels of mobility, communication abilities, and medical complexities that may be present within the Angelman syndrome community. The Angelman Syndrome Foundation assumes no liability for the care provided based on this guide, and strongly recommends additional training and consultation with healthcare and therapeutic professionals for individualized guidance and support.
Questions & Support
If you need help or advice along way, contact kely@angelman.org.
If you are experiencing issues navigating the website or accessing links, contact webmaster@angelman.org.
Contents
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What is Angelman Syndrome?
Angelman syndrome (AS) is a rare neuro-genetic disorder that occurs in one in 15,000 live births or 500,000 people worldwide.
It is caused by a loss of function of the UBE3A gene in the 15th chromosome derived from the mother.
Angelman syndrome shares symptoms and characteristics with other disorders including autism, cerebral palsy and Prader-Willi syndrome.
Due to the common characteristics, misdiagnosis occurs often.
People with Angelman syndrome have developmental problems that become noticeable by the age of 6 – 12 months.
Other common signs and symptoms usually appear in early childhood like:
- Walking and balance disorders
- Gastrointestinal issues
- Seizures
- Little to no speech
Despite these symptoms, people with Angelman syndrome have an overall happy and excitable demeanor. An individual with AS will light up a room with their smile and laughter.
People First
When caring for an individual with AS, it is extremely important to engage with him/her. Discuss what you are doing, your schedule, talk about yourself, ask questions.
Presume Confidence
Always assume that the individual you are caring for can understand what you are saying.
- Believe in ability, not limitation. Every person who lives with Angelman syndrome is capable of learning, growing, and expressing themselves, even if their communication looks different.
- Assume understanding. Just because someone doesn’t use spoken words doesn’t mean they aren’t listening, processing, or understanding what’s being said.
- Speak to the person, not about them. Always address the individual directly with respect, warmth, and inclusion in conversations and decisions.
- Give time and opportunity. Many individuals with AS need more time to respond. Wait patiently, and trust that communication will come in their own way and time.
- Offer choices and voice. Presuming competence means providing ways for individuals to express preferences, make decisions, and take ownership of their daily lives.
- Set high expectations. When we believe someone we open doors for independence, achievement, and confidence.
- Model inclusion. Presuming competence means including people with AS in classrooms, workplaces, faith communities, and social circles — always assuming they belong.
- Celebrate progress, not perfection. Growth may come in small steps, but every milestone reflects intelligence, determination, and effort.
- Use accessible communication. Tools like AAC devices, sign language, and visual supports empower expression and reinforce the message: your voice matters.
- Lead with dignity and respect. Above all, presume competence means recognizing each individual as a whole person — not defined by their diagnosis, but by their humanity, personality, and potential.
Every individual with Angelman syndrome has their own pace and personality — but there are so many beautiful things that are typical of what they CAN do.
Examples of Things Individuals with Angelman Syndrome CAN Do
Show Joy & Connection
Smile, laugh, and express happiness in ways that light up a room.
Build Deep Relationships
Form strong bonds with parents, siblings, teachers, and peers.
Communicate Creatively
Use gestures, signs, AAC devices, or eye gaze to make their needs and feelings known.
Engage Socially
Love being around people, attending events, and sharing in group activities.
Demonstrate Problem Solving
Figure out how to get what they want, even if it means taking a creative route!
Learn and Retain Skills
Develop and maintain skills through repetition and routine.
Participate in Family & Community
Help with chores, celebrate holidays, and be part of shared experiences.
Enjoy Music & Rhythm
Dance, clap, or hum along to music — often with infectious enthusiasm.
Explore the World
Walk, play, swim, or participate in adaptive recreation activities.
Explore the World
Walk, play, swim, or participate in adaptive recreation activities.
Wall of Accomplishments
Visit our Wall of Accomplishments to see individuals walking, swimming, climbing and exhibiting independence!
Many of these individuals’ parents were told their child would never do these things.
See some examples below
Hear from a Caregiver
Gastrointestinal Concerns
GI Issues and concerns are common in AS. Adults with AS often experience reflux, constipation, and risks of aspiration. Due to communication deficiencies, GI symptoms may be difficult to recognize. It is known that GI symptoms cause discomfort that may aggravate sleep problems, and cause disruptive behaviors.
For more in-depth information, watch this recording from a session at the 2024 ASF Family Conference.
Feeding Tube
- Wash hands thoroughly before and after touching the tube or feeding supplies
- Clean the stoma site daily with mild soap and water; pat dry
- Flush the tube with warm water
- Before and after each feeding or medication (ask medical professional for recommended amount)
Feeding Equipment Hygiene
- Use clean supplies:
- Wash syringes, feeding bags, and containers with warm, soapy water after each use.
- Rinse thoroughly and air dry.
- Wash syringes, feeding bags, and containers with warm, soapy water after each use.
Replace feeding sets every 24 hours (or as directed by your healthcare provider).
Tube Site Monitoring
- Check for:
- Redness, swelling, or discharge
- Odor or pain
- Leaking around the site
- Redness, swelling, or discharge
- Report any signs of infection or damage to the tube immediately.
Aspiration
Aspiration happens when food, liquid, saliva, or other substances are not swallowed correctly and enter the airway instead of going down the esophagus to the stomach. In individuals with Angelman syndrome (AS), aspiration may go unnoticed (silent aspiration) and can lead to:
- Recurrent pneumonia or respiratory infections
- Chronic coughing or choking
- Poor weight gain or nutrition challenges
Signs of aspiration:
- Persistent coughing particularly during or after meals
- Frequent choking
- Difficulty breathing
- Recurrent respiratory infections
Ways to Prevent Aspiration:
- Ensure the individual is seated upright while eating and drinking.
- Use thickened liquids and pureed foods if recommended by a healthcare provider.
- Monitor for any signs of difficulty swallowing and seek speech therapy if needed.
- See the ASF Aspiration Prevention Guide
Constipation
About 85% of adults with AS experience constipation
- Signs of constipation: Fewer than three bowel movements a week. Hard, large or dry stools, and visible discomfort- straining during bowel movements.
- The complications of chronic constipation can be serious and life-threatening, including fecal incontinence, hemorrhoids; anal fissure; pelvic organ prolapse; fecal impaction and bowel obstruction.
- Best Treatment Approaches:
- Encourage a diet high in fiber (fruits, vegetables, and whole grains)- 25 g/day is recommended
- Ensure adequate fluid intake.
- Use laxatives (such as Miralax- PEG+E is safe and effective in the clinical management of constipation in people with intellectual disability) with a doctor’s approval.
- Keep record of the bowel movements.
- Make sure you report to parent/guardian your concerns
Gastroesophageal Reflux
- How to recognize potential reflux in individuals w/ AS
- Recurrent vomiting, discomfort after meals, regurgitation, frequent coughing can also be a sign of reflux as well as irritability after eating.
- Recurrent vomiting, discomfort after meals, regurgitation, frequent coughing can also be a sign of reflux as well as irritability after eating.
- Best over the counter meds to treat reflux if not on daily meds
- Antacids (e.g., Tums)
- H2 blockers (e.g., Pepcid)
- Proton pump inhibitors (e.g., Prilosec)
- Make sure you report your concerns to parent/guardian and always consult a healthcare provider before starting treatment
Eosinophilic Esophagitis (EoE)
- Symptoms may include trouble swallowing, food getting stuck in the throat, chest discomfort, vomiting, or acid reflux that does not respond well to treatment.
- If you suspect EOE, make sure to contact parent or guardian to discuss next steps
Medical Concerns
- Common signs of UTI and impaction – how they are different from neurotypical individuals
- Therapies
- How to follow up with PT,OT, and other therapists at home, day programs and residences.
- How to use equipment they may have
- How to work with Insurance
- Support for Caretakers and Families
- Dental/oral: 1–2×/year; consider aspiration/swallow risk.
- Behavior/mental health: At every visit—treat sudden behavior/sleep/appetite changes as medical red flags.
Preventative Screenings for Adults
It’s important for adults and teens with Angelman syndrome to receive the same medical screenings as typical adults.
- Primary care & vaccines: Annual physical; keep routine adult screenings (Pap, colon, lipids) and immunizations up to date.
- Bone & ortho: Scoliosis check yearly; DEXA if risk factors (antiseizure meds, low mobility, keto history); assess gait/hips.
- Vision & hearing: Every 1–2 years (sooner if changes noted).
- Safety & supports: Review mobility aids, communication (AAC), emergency plan, and care coordination yearly.
Seizures
Types of Seizures Common in Individuals with Angelman Syndrome
- Myoclonic Seizures: These are quick, sudden muscle jerks, often observed in the arms or upper body.
- Atonic Seizures: This type involves a sudden loss of muscle tone, which can lead to the individual collapsing or falling.
- Generalized Tonic-Clonic Seizures: This type manifests as a full-body seizure with stiffening and jerking movements.
- Tremors: These are rhythmic shaking of the hands, arms, head, legs, or torso. It has a regular pattern. And is usually continuous and consistent.
- Dystonia: An involuntary maintained contraction of muscles leading to abnormal posturing, twisting and repetitive movement
When to Go to the Emergency Room
Knowing when to seek emergency care can help keep your loved one safe. Go to the Emergency Room (ER) or call 911 if:
- A seizure lasts longer than 5 minutes, or there is no recovery between seizures (status epilepticus).
- Breathing looks irregular or extremely shallow, bluish lips or around mouth.
- Your individual is injured during the seizure (hit head, bleeding, bitten tongue badly, etc.).
- They are unresponsive for an unusually long time after the seizure or have significant trouble breathing.
- You’ve used the rescue medication and the seizure activity continues.
- You are unsure, or it just feels different or unsafe — trust your instincts.
Tip: Keep a copy of the individual’s seizure action plan (from the neurologist) and emergency medications (like rescue medication) easily accessible at all times.
Important Tips for Caregivers when Individual with AS is Having a Seizure
- Make sure the individual is laying down and airway is clear
- Time the length of seizure
- If able, try to capture on video
- Know when to call 911
- Have immediate access to rescue meds if prescribed
Tips from Caregivers on How to Administer Seizure Medication
Families in the Angelman community shared a few strategies that help make seizure medication easier to give, especially during stressful moments:
- Stay calm and focused. Take a deep breath before you start. Your individual will sense your calm.
- Have rescue meds ready and visible. Keep them in the same spot at home and in a labeled bag when traveling.
- Practice before you need it. Many parents use a trainer device (like a nasal spray practice unit) to feel confident in how to administer it quickly.
- Use visuals or reminders. Some families post a short checklist near their meds: “Time started, dose given, next step.”
- Communicate clearly with others. Make sure everyone on your care team (teachers, therapists, respite providers) knows when and how to give seizure medications.
- After the dose: Stay close and observe. Note any changes in breathing, color, or responsiveness, and be ready to follow your emergency plan if needed.
Seizure Protocol/Emergency Seizure Plan
- See Seizure Treatment Guidelines
- Outpatient of Non-convulsive Status Epilepticus in Angelman Syndrome
Myoclonus in Angelman Syndrome and Adults
- Published Paper: Myoclonus in Angelman Syndrome
Seizure Trackers
Keeping track of seizures can help doctors adjust medication and see progress over time. Use a seizure tracker to record:
- Date, time, and duration of seizures
- Type of seizure (movement, staring, drop, etc.)
- What happened before (triggers like sleep loss, illness, missed dose)
- Medications given and response
Free Seizure Tracking Tools
Standards of Care
- Daily monitoring of bowel movements
- Check skin integrity daily
- At minimum daily bath
- At minimum brush teeth twice a day
- Inspect mouth for any abnormalities
- Monitor eating at all times (high risk for aspiration/choking)
To help guide high-quality care and understanding for individuals living with Angelman syndrome, we encourage all respite providers to review the Angelman Syndrome Standards of Care. These guidelines were developed by clinical experts and the Angelman Syndrome Foundation to outline best practices across medical, behavioral, and daily living needs. They serve as a valuable tool to ensure consistency, safety, and dignity in every aspect of care. Download Standards of Care.
Therapies
Partnering with Therapists
- Individuals living with Angelman syndrome often receive ongoing Physical Therapy (PT), Occupational Therapy (OT), Speech/Communication Therapy (SLP/AAC), and other supports.
- Stay in communication and follow up with each therapist involved, whether at home, school, or day program, to ensure consistency.
- Request written or visual plans when available (exercise sheets, communication guides, positioning instructions).
- Ask questions if you are unsure how to safely perform a task or use adaptive equipment.
Use Equipment Safely
- Many individuals use adaptive tools such as gait trainers, standers, wheelchairs, feeding chairs, orthotics, or AAC devices.
- Always receive hands-on instruction before use. Follow safety straps, positioning cues, and time limits.
- Check for signs of discomfort, redness, or poor fit, and report concerns immediately to the caregiver or therapist.
- Never modify or adjust therapeutic equipment without approval
Supporting Caregivers & Families
- Families manage a high volume of care coordination; your support helps them recharge and sustain balance.
- Keep open communication. Note progress, new skills, or concerns after each shift.
- Offer empathy and respect family routines and preferences.
AFOs / SMOs
Ankle-Foot Orthoses (AFO) and Supramalleolar Orthoses (SMO) are types of orthotic braces that give support for walking.
- Include how to properly care for AFOs/SMOs
- How often or when an individual needs to wear braces?
- Before placing braces on – check to make sure the braces are clean and free of any debris on the inside.
- Only use braces with correct socks and shoes
- Make sure they are always on the correct foot
Watch a short video about putting on AFOs/SMOs
Ambulatory vs Non-Ambulatory
Individuals with AS may experience issues with walking and balance. This requires caregivers to be able to assist them when needed.
Ambulatory: Individual is able to walk around with or without assistance
Non-Ambulatory: Individual is unable to walk around and needs maximum assistance
- Make sure to always talk to individual about what you are doing and why/where you are going
- Depending on how ambulatory an individual is, you may need to transition them in a wheelchair, their bed, to a regular chair or a stander.
See information and illustrations on safe transition practices.
Behaviors
Individuals with Angelman syndrome may exhibit unique and sometimes challenging behaviors that are important to understand and support with patience and care. Caregivers need to be equipped with techniques to help de-escalate behaviors.
Examples of behaviors:
- Impulsivity or lack of danger awareness
- Sensory-seeking behaviors, such as mouthing or touching everything
- Strong attraction to water (which can be both joyful and risky)
- Challenges with transitions or changes in routine
- Aggressive or self-injurious behavior, often as a form of communication
- Grabbing or pulling others’ hair or clothing
- Excessive chewing or mouthing of objects
- Fascination with certain objects or repetitive actions
These behaviors usually stem from communication difficulties, sensory processing differences, or simply the way the individual experiences the world. However, it’s important to know there could be health issues that contribute to these behaviors, like:
- Constipation
- Fever
- Lack of Sleep
- Pain
- Medication side effects
Anxiety Triggers
The following are common reasons an individual with AS might experience anxiety:
- Crowds
- Overstimulation
- Unable to communicate
- Lack of schedule/routine
- New environment or unfamiliar area
- New caregivers
Communication
Individuals living with Angelman syndrome often have limited or no verbal speech, but that does not mean they don’t understand or have things to say. Every person communicates — it’s our job to recognize, respect, and support the ways they do.
Always assume understanding. Individuals with AS often comprehend much more than they can express verbally. Speak directly to them, not about them. Give them time to respond, and use consistent cues and routines to support comprehension.
Individuals with Angelman syndrome may require specialized strategies and supports to help them express themselves and connect with others.
Augmentative Alternative Communication (AAC)
AAC includes speech-generating devices, tablets, communication boards, and symbol systems that allow individuals to express wants, needs, and emotions.
Tips:
- Treat the AAC device as the individual’s voice — it should always be within reach.
- Encourage its use throughout the day: during meals, play, and transitions.
- Model use by pointing to icons and speaking naturally (e.g., “Let’s go outside” while pressing go + outside).
- Avoid taking the device away as a consequence — it’s not a toy, it’s their communication.
Modeling
Modeling means you demonstrate how to communicate using the same tools the individual uses.
- Use the AAC device or visual supports yourself while talking.
- Don’t expect immediate imitation — consistent exposure builds understanding and confidence over time.
- Reinforce attempts at communication — any sign, sound, or gesture counts!
Picture Exchange Communication System (PECS)
Some individuals may use PECS, where they hand over a picture to request or label something.
- Keep picture cards accessible and organized.
- Reinforce exchanges by immediately providing the requested item when possible.
- Praise communication efforts rather than focusing on perfection.
Signs & Gestures
Many individuals use simple signs or enhanced natural gestures (pointing, tapping, leading an adult by the hand).
- Learn the most common gestures or signs the individual uses — families or therapists can provide a list.
- Be consistent: respond to gestures as intentional communication.
- Expand on them by adding verbal language or AAC modeling at the same time.
Supportive Strategies
- Be patient. Wait longer than feels natural for a response.
- Watch for cues. Facial expressions, body movements, and sounds often carry meaning.
- Use visuals. Schedules, picture symbols, and written words help create predictability.
- Validate all efforts. Smiles, laughs, or even looks of intent are communication.
Watch videos of individuals with AS communicating.
Key Takeaway
Your role as a respite worker is to amplify their voice, however it comes. Every communication attempt deserves recognition, respect, and reinforcement. When we presume competence and give the right supports, individuals living with Angelman syndrome show us just how much they have to say.
Daily Care
Supporting hygiene and daily care is essential for health, dignity, and comfort. Consistency and respect are key. Each individual with Angelman syndrome has unique preferences and sensitivities.
Comprehensive Care Binder
Use the Comprehensive Care Binder to track and coordinate daily care.
Hygiene
- Follow the individual’s personal care plan created by caregivers or nurses.
- Always explain what you are doing before touching or assisting.
- Encourage independence when possible — small steps matter (handing a toothbrush, choosing clothes, etc.).
- Maintain privacy and respect during all hygiene routines.
Getting Dressed
- It is important for individuals with Angelman syndrome to be presentable and not have stained or dirty clothes. Gives more confidence. Would you wear dirty clothes on a daily basis?
- Offer choices when appropriate to promote independence.
- If the individual seems agitated or uncomfortable, check for clothing that may cause discomfort (tags, tight waistbands, or seams).
- Dress for temperature and activity — comfort and safety first.
Personal Grooming
- Brushing Teeth: Use fluoride toothpaste and a soft brush; encourage participation. Track brushing morning and night. Use floss if able. Floss sticks are a great option.
- Brushing Hair: Gentle detangling daily; consider sensory sensitivities.
- Nail Trimming: Keep nails short to prevent scratching or skin breakdown.
- Haircuts: Follow family preferences
- Shaving: Support both males and females appropriately; use electric shavers when possible for safety. Consult with primary caregiver about preferences.
- Hygiene Trimming: Maintain cleanliness and comfort in sensitive areas — important for preventing rashes, infections, and maintaining dignity. Have a conversation with primary caregiver about preferences.
Daily Medication
- Follow the caregiver’s or nurse’s medication log exactly as written
- Double-check names, dosages, and times before dispensing.
- Never mix medications with food or drink unless instructed.
- Observe for side effects (sleepiness, irritability, rash, constipation) and document or report changes immediately.
Sleep Hygiene/Routine
- Keep consistent bedtime routines: same time, calm environment, quiet lighting.
- Know the type of bed used:
- Sleep-safe beds provide secure enclosures for safety.
- Hospital-type beds allow positioning for reflux or mobility issues.
- Standard beds may be used for adults who don’t require adaptations.
- Ensure the sleep area is clutter-free, with safe bedding and monitoring devices as needed.
Toileting & Hygiene
- Follow the individual’s toileting plan (toilet-trained, day-trained with night incontinence, or diapered).
- Encourage independence, using visual cues or schedules.
- Always wipe front to back to prevent urinary tract infections; use gentle wipes or soft toilet paper.
- Record any changes in bowel or bladder patterns — constipation and retention are common concerns.
Meals & Feeding
- Some individuals follow a Low Glycemic Index Treatment (LGIT) or modified ketogenic plan — confirm diet before preparing meals.
- Use safe feeding techniques:
- Ensure upright positioning during and after meals.
- Offer small bites, slow pacing, and supervision.
- Know signs of choking and review the Heimlich maneuver video during training.
- Monitor for GI discomfort, coughing, gagging, or prolonged feeding times.
- Encourage hydration throughout the day.
- VIDEO: Heimlich
Daily movement and exercise
- Movement supports digestion, sleep, and mood.
- Encourage daily physical activity adapted to ability — walks, stretching, dance, or yoga (Video: Individual with AS doing Yoga).
- Follow physical therapist guidance for positioning and exercises.
- Motivation matters: learn what each individual enjoys and use positive reinforcement to keep them engaged.
Activities for daily inclusion
- Promote choice and autonomy — even small decisions build confidence.
- Inclusion means participation, not perfection — every effort counts.
Safety Awareness
All caregivers and respite providers supporting individuals with Angelman syndrome must understand that safety requires constant supervision, prevention, and environmental awareness. Individuals with AS are often curious, quick-moving, and may lack awareness of danger.
General Safety Considerations
- Higher pain threshold: Many individuals with AS don’t show typical pain responses. Never assume “no reaction” means “no problem.” Watch for subtle signs — changes in mood, movement, or sleep can indicate pain or illness.
- Elopement risk: Some individuals may wander or run suddenly, often without awareness of danger. Always know exit points and secure doors and gates.
- Water fascination: Individuals with AS are often drawn to water — pools, lakes, fountains, bathtubs, or even toilets. Constant, direct supervision is essential anytime water is nearby. Never assume they “know their limits.”
Temperature awareness: Some individuals may not indicate if they are too hot, cold, or sunburned. Monitor for overexposure to heat or cold and dress accordingly. - Choking & feeding safety: Due to motor or oral coordination challenges, ensure safe feeding practices and never leave an individual unattended while eating.
Transportation Safety
- Harnesses and restraints: Use appropriate vehicle harnesses or safety restraints for age, size, and mobility level. Consult caregivers for their specific equipment.
- Child locks and window locks: Always activate these to prevent accidental opening during transit.
- Supervision: Never leave an individual with AS alone in a vehicle, even for a moment.
- Transitions: Many individuals may resist getting in or out of cars; maintain calm, use visual supports, and always secure before driving.
Home and Environmental Safety
- Secure exits: Keep doors locked with childproof mechanisms if elopement risk is present.
- Windows: Use locks or restrictors, especially above ground level.
- Appliance awareness: Be cautious with stoves, hot surfaces, and sharp objects.
- Outdoor spaces: Fence in yards if possible; ensure constant supervision when outside.
- Medication access: Be aware of where rescue medications are stored and how/when to administer if trained.
Emergency Preparedness
- Know the emergency plan: Understand seizure protocol, allergy plans, and emergency contact numbers.
- Communication: Many individuals with AS are non-verbal; have their communication device or ID with them at all times in case they are separated from caregiver
- Behavioral escalation: If agitation or distress occurs, stay calm, provide space, and alert the caregiver — sudden behavior changes may signal pain, fear, or medical distress. Refer to Behavior section of training for more info
Sensory Processing
Sensory Processing Disorder: a condition in which multisensory input is not adequately processed in order to provide appropriate responses to the demands of the environment. Individuals with SPD may inadequately process visual, auditory, smell, taste, tactile, vestibular/balance, proprioception/body awareness.
Examples of Sensory Seeking Behavior:
- Touching: people or objects, can be aggressively trying to grab items or people as well.
- Movement: rocking, jumping, arm flapping, spinning, crashing
- Loud noises: seeking out or making loud noises
- Proprioception: hanging head upside down, giving tight hugs
- Picking at fingers
- Constantly playing with anything in reach
- Obsessive laughing
- Chewing on objects, clothes, toys
Sensory Diet
Standards of Care
- Daily monitoring of bowel movements
- Check skin integrity daily
- At minimum daily bath
- At minimum brush teeth twice a day
- Inspect mouth for any abnormalities
- Monitor eating at all times (high risk for aspiration/choking)
To help guide high-quality care and understanding for individuals living with Angelman syndrome, we encourage all respite providers to review the Angelman Syndrome Standards of Care. These guidelines were developed by clinical experts and the Angelman Syndrome Foundation to outline best practices across medical, behavioral, and daily living needs. They serve as a valuable tool to ensure consistency, safety, and dignity in every aspect of care. Download Standards of Care.
Therapies
Partnering with Therapists
- Individuals living with Angelman syndrome often receive ongoing Physical Therapy (PT), Occupational Therapy (OT), Speech/Communication Therapy (SLP/AAC), and other supports.
- Stay in communication and follow up with each therapist involved, whether at home, school, or day program, to ensure consistency.
- Request written or visual plans when available (exercise sheets, communication guides, positioning instructions).
- Ask questions if you are unsure how to safely perform a task or use adaptive equipment.
Use Equipment Safely
- Many individuals use adaptive tools such as gait trainers, standers, wheelchairs, feeding chairs, orthotics, or AAC devices.
- Always receive hands-on instruction before use. Follow safety straps, positioning cues, and time limits.
- Check for signs of discomfort, redness, or poor fit, and report concerns immediately to the caregiver or therapist.
- Never modify or adjust therapeutic equipment without approval
Supporting Caregivers & Families
- Families manage a high volume of care coordination; your support helps them recharge and sustain balance.
- Keep open communication. Note progress, new skills, or concerns after each shift.
- Offer empathy and respect family routines and preferences.